Introducing Myself

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Billdel
Posts: 7
Joined: Sun Jan 28, 2018 10:22 pm

Introducing Myself

Postby Billdel » Mon Jan 29, 2018 2:31 pm

Hi. My name is Bill and I am a long time RLS sufferer. It began when I was in knee pants, but occurred very seldom until I was a teenager when it became more often but still not regularly. It began with a growing vengeance when I was 45 years old. At that time, I visited a Doctor/ Researcher at Emory University, who had a advanced case of RLS and was establishing a research group. After hearing the list of drugs and medications he was taking, I shied away fearing the worse. I figured I would would come up with a better option. Needless to say, that didn't happen. After awhile the symptoms got so bad that I ask my physician for help. He prescribed Mirapex. I got the generic version, Pramipexole and almost immediately moved to the 1 gm level several times a day. After awhile that increased to 3 times a day. I had developed a schedule to take it each day to preempt the symptoms from occurring. In the last year, I began to notice that shortly after taking a dose, I would have the symptoms come on and had a hard time getting them under control. Also, I began to have tremors in my shoulders. So, I evolved into taking a 4th, 1 mg dose, occasionally, and continued to have the same problems. Recently, I decided to look for an RLS doctor. In the process, I found the RLS Foundation and began to review the many sufferers legends and found out about augmentation. I decided I needed to phase out the pramipexole. I cut to 2 pills, for 2 days and my impatience got the best of me and I hence stopped it all together. Whew, what fun I am having. It has been 8 days since I started with the 2 a day. Unfortunately, I had forgotten how badly RLS symptoms could be. I now remember!
I am struggling, but vow not to return to the pramipexole. I have spent a lot of my exceedingly abundance of wake time looking into what to do when I am out of the withdrawal, although some help with the symptoms now would be GRAND. I have seen Dr. Christopher Earley's video on iron infusion and feel like that is a great option, if I can find a Doctor to administer it, properly. Therein, I have contacted Emory RLS Clinic, but must wait until March to get in to see one of the Doctors. At the moment, that seems like a lifetime away.
Well, that's my story, and I'm sticking to it!
Thanks for your patience and I look forward to interacting with other Board members on this topic.
Bill

Rustsmith
Moderator
Posts: 3055
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Introducing Myself

Postby Rustsmith » Mon Jan 29, 2018 3:51 pm

Bill, welcome to the board. I'm glad you found us but sad that you are having to go through all of this. But as I am sure you have seen by now, your story is not highly unusual. Many of us were allowed to take far too much dopamine agonist and then had to suffer during the wait to be able to see an RLS specialist.

As for what you can do right now, unfortunately the answer is that you need to be able to take an opioid medication in order to get relief from the withdrawal from the pramipexole. But with the "opioid crisis" in the media and being pushed by regulators, many if not most doctors are afraid to prescribe them. You could try asking your GP for Tramadol to help you through this next period, but there is a good chance you will be told no.

Since it appears that you have done a great deal of online research, you might also want to see about purchasing a copy of "Clinical Management of Restless Legs Syndrome", Ed 2, by Lee, et. al. It is available from Amazon for about $30 and although is was written for doctors, it was also written at a level that most of us can understand. Many of us carry our copy to our appointments with non-RLS expert doctors to use as a reference. Some have even given copies to their doctors to help educate them.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 526
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing Myself

Postby stjohnh » Mon Jan 29, 2018 4:12 pm

Hi Bill. I agree with Steve, you need opioids for relief now. Perhaps you have some left over pain meds (Vicodin or percocet, and others). If that is not an option and you can't get tramadol or some other narcotic (opioid) from your doctor, kratom may ease some of your suffering. It has opioid properties and helps many folks here. It is not as strong as prescription opioids, but you can have it by tomorrow if you pay a bit more for expedited delivery. It is legal in most states.

After your mirapex withdrawal is over, and until you see the RLS doc, I think you should consider low dose mirapex (0.125mg daily) along with whatever opioid you can get. I know you are very hesitant to use mirapex again, however very low doses are unlikely to cause the augmentation problems that you are trying to get away from. That dose of mirapex will not control your symptoms by itself, however in combination with an opioid it is likely to make a big difference, and indeed possibly even with the Kratom and low-dose mirapex you might get satisfactory relief. Your body will be much more responsive to low doses of mirapex after the withdrawal phase is over.

Additionally, you can start oral iron today, while that won't help today, it will get you started on getting your iron levels up. While the iron infusion is a possibility, you will not have that option until you have made a good effort to get your iron levels up with oral iron. Take ferrous sulfate, one daily on empty stomach with vitamin C.

Another possibility is to try Neupro patches. That is one of the options for people that have augmented on short-acting dopamine agonists like pramipexole. The good part of that is it's likely to be fairly easy to get your doctor to prescribe it, the bad part is that it has only a moderate chance of giving you good relief by itself. It is one of the accepted options for the next step after withdrawing from a short-acting dopamine agonist like pramipexole. It is very expensive, about $1,000 per month, so if you go that route to be sure and get just a one-week prescription to start with.
Blessings,
Holland

Billdel
Posts: 7
Joined: Sun Jan 28, 2018 10:22 pm

Re: Introducing Myself

Postby Billdel » Tue Jan 30, 2018 3:10 am

I have some Okycodone- Acetiminophen 10-325 that was given after recent cervical Disectomy, that I never used. I think this is the same as Percocet
I am not familiar with these meds. do you think 1 or 2 would do? I am a little apprehenssive about the reputation of these, opoiods, to become addictive. Would appreciate your thoughts.
Bill

Billdel
Posts: 7
Joined: Sun Jan 28, 2018 10:22 pm

Re: Introducing Myself

Postby Billdel » Tue Jan 30, 2018 3:15 am

Thanks Holland, You answered some of the questions I have. Per my Primary Care Dr. my Iron numbers are in mid range. I don't know what they need to be to be considered for the iron infusion.
Bill

Polar Bear
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Posts: 7105
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Introducing Myself

Postby Polar Bear » Tue Jan 30, 2018 12:33 pm

Welcome Bill - Your PCP has said that your iron numbers are in mid range but he possibly talking about your general blood work.

What we, as RLS sufferers, need is a Ferritin Serum level of around 100. Someone without RLS will be ok with a reading of around 20.
This is the iron storage in the brain and is not normally done amongst general blood works. You should specifically ask for this to be done.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stjohnh
Posts: 526
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing Myself

Postby stjohnh » Tue Jan 30, 2018 1:54 pm

Bill, yes, your oxycodone-acetaminophen would likely help you tremendously. Take one and see what happens.

As Betty mentioned, you need to find out the actual ferritin test result number. To clarify Betty's statement, the ferritin test measures the iron storage in the blood (not the brain). People with RLS have low iron levels in the brain, this is not easily measured, but the closest test that we can get is the ferritin in the blood. One of the underlying factors that causes RLS appears to be a problem in transporting iron from the blood into the brain.

To qualify for an IV Iron Infusion, you will probably have to have a persistently low ferritin of 50 or so after you have made a good effort to get your ferritin up by taking several months of oral iron. Different doctors use a different numbers so it's impossible to say exactly what your doctor will recommend.
Blessings,
Holland

badnights
Moderator
Posts: 4834
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Introducing Myself

Postby badnights » Tue Jan 30, 2018 11:03 pm

Everyone has given you good advice. I will add that one tablet of oxycodone 10 mg may - depending on where you are in the withdrawal - may not help very much. Depending on how many you have left, you may want to try one and see if it helps, if not, try two.

I like the advice to order kratom now if you can. It ought to help somewhat during withdrawal, and definitely afterward once your symptoms have retreated to their baseline (un-augmented) level.

About the iron - at least one pill of ferrous sulfate (with 60 or 65 mg elemental iron), taken on an empty stomach with vitamin C - - it you weren't augmented and withdrawing, I would say that if you didn't notice an improvement in your symptoms after 2 weeks, you could increase it to two pills a day. But you won't be able to tell if it's helping or not. (I take 3 a day. If I reduce to two, my symptoms ramp up within about 2 weeks, and take about that long to settle down again if I resume the three pills. Presumably, my ferritin levels start to drop as soon as I stop taking the iron.)

But MAINLY what I want to say is, Congratulations on making it to day 8! There is more to go, but you have the determination to push though it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Billdel
Posts: 7
Joined: Sun Jan 28, 2018 10:22 pm

Re: Introducing Myself

Postby Billdel » Tue Feb 06, 2018 8:47 pm

Thanks to all for the suggestions. Believe me, I have taken them to heart. I Took the 2 mg Klonopin for 3 days and slept deeply, but can not shake the stupor the next day. Gave them up last night and had no RLS symptoms but slept very fitfully. Based on someone saying the 1/2 lofe of Klonopin is 20 hours, I have about 5 days to shake the residual problems, I think. Badnights, I have been taking 65 mg Iron at bed time bit not with Vit. C. Think I may up it to 2 with Vit C. will hold the Oxyconon in reserve, if needed.
I have recent Iron 3's but the terminology does not correspond to what I see, referred to her,e in reviews.I have Ferritin 184: Iron Total 84:
Iron Binding Capacity 338 and % Saturation 25. And, my Doctors all agree they are OK. Oh well, hurry up March.


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